THE BLOG

The Question

Motherhood, unlike any other experience, is a testament to the strength and resolve of women. It is an instinctual force driving us to shelter, protect and invest everything in them from inception till our deaths--no matter the ramifications. It is our sense of purpose, our life's mission and work, our oath: once a mother, always a mother.
This post was published on the now-closed HuffPost Contributor platform. Contributors control their own work and posted freely to our site. If you need to flag this entry as abusive, send us an email.

Motherhood, unlike any other experience, is a testament to the strength and resolve of women. It is an instinctual force driving us to shelter, protect and invest everything in them from inception till our deaths--no matter the ramifications. It is our sense of purpose, our life's mission and work, our oath: once a mother, always a mother.

There is a common question that many parents, especially mothers, encounter when meeting someone for the first time: how many children do you have? For those of you who have lost a child, you know the simple calculus that ensues: save our new acquaintance from social unease by subtracting the child(ren) who has died or charge forward with the uncomfortable silence that inevitably follows.

2016-05-07-1462647584-1049784-motherdaughter.jpg

While our daughter, Eleanora, was born with a "condition not compatible with life," as with our other children, there was nothing we wouldn't have done for her. She was never supposed to survive, even through pregnancy. Every minute was borrowed time. All in all, we had five months of hope, of life.

Yet, those around us were invested in her death, not our hope. Our hospice, like most, did not have a pediatric specialty. It simply isn't profitable. Finding qualified practitioners is a challenge for many parents. While 40,000 children under the age of 19 die annually, and 500,000 live with life-limiting conditions, The American Board of Pediatrics lists only 234 board-certified pediatric hospice and palliative care physicians in the nation.

Our health insurer called every few weeks to ask how much longer we thought she would live; even experienced physicians are unable to predict death well. Our case worker explained her dilemma: if she were to live only ten days there was less paperwork, if more there would be longer, more detailed formalities. Believing she would continue to beat the odds, as she had for months, I tried to enroll her in Medicaid only to be asked why I was bothering because she would likely die before they finished the paperwork.

Conversely, hospice provided a list of funeral homes for me to call--with the phone on one shoulder and Eleanora on the other I garnered estimates. Those conversations were no different than with our insurer: if she died soon, they would "cut me a deal." Only a handful of homes were more compassionate. There were no profits to be made with the death of a child.

As my sense of conviction grew to invest her life, Eleanora's was waning. Soon I was confronted by the most difficult decision of my life: giving her permission to die on her terms, not mine.

Before and after: that is how I see my life today--and I'm not alone. According to the Center for Disease Control and Prevention's collective mortality statistics from stillbirth to age 54, American families lose a child every two minutes. While many invoke images of younger children, like Eleanora, research reports that older parents tend to fare much worse than their younger counterparts.

Even our nation's most respected scholarly institutions agree. As the National Academies' has reported, "While bereavement is stressful whenever it occurs, studies continue to provide evidence that the greatest stress, and often the most enduring one, occurs for parents who experience the death of a child." Parents are likely to suffer from depressive symptoms, poorer well-being, acute health problems and marital disruption. In fact, mothers and fathers may also die as a result; mothers die from both unnatural and natural causes, while fathers die from unnatural causes (i.e., suicide and accidents). Parents often feel less purpose in life, earn less wages and see a reduction in future income.

Common social policies, such as the Family and Medical Leave Act, do not consider child death a qualifying event for job protection. According to one survey, 63 percent of employers give only three days of paid bereavement leave. Worse off are those whose employers offer no paid leave.

It is a silent epidemic and yet a common language for all who experience such catastrophic loss. The death of a child does not discriminate; it transcends race, religion and socioeconomic status. It is woven into our nation's narrative, philosophy and history. Whether its from our earliest spiritual accounts of Adam and Eve or touching the lives of past luminary presidents--Jefferson, Lincoln, Eisenhower, Kennedy, it is an ever-present issue that touches us all. It is present, although invisible, in sensational, and sometimes obscure, headlines following tragedy: Black Lives Matter, the War on Cancer, September 11th, the Boston marathon, the Hot Shot fire brigade or our service members dying in combat or the countless other deaths, like our child's that do not garner headlines.

Losing a child is prevalent, if not endemic, in the United States with little attention focused on its ramifications. In 2015, experts found "very little evidence of sufficient quality is available to confirm the effects of intervention measures on bereaved parents and siblings following the death of a child."
We were told to find a therapist, go to a support group and given books about grief to let us know how we should feel. If you can afford a therapist, you are in the minority. We spent our savings on multiple weekly visits at $250 for 90 minutes with our insurer only reimbursing $72.

The unanticipated reminders are the most wrenching. Nearly a year had passed and still we received diaper coupons from our local superstore. We filed our taxes only to learn that someone else had claimed our dead daughter. We filed the required paperwork to prove that our dead child was, in fact, our dead child.

As a society, we can and must do better. We should build an inclusive and far-reaching web of support enabling parents of all walks of life to access support on their own time, in their own homes, in their own ways and at their own pace. We should offer parents a constellation of programs to cope with their loss and impending life changes, safeguarding them from transactional conversations and other forms of secondary victimization. We should foster a sense of community and belonging among the many parents who surround us daily while offering a variety of methods and materials to honor the presence and absence of their child in the world and in their family. We should advance the science of bereavement among all cultures, races, ethnicities and religions and parlay our findings into tangible practice and support.

There are reasons to believe we can achieve change. We can all give parents a tomorrow where they can see themselves surviving tragedy--whether Republican or Democrat, prince or pauper, for those who have lost a child before independent life begins or as an octogenarian. Providing a place where parents feel supported even in their darkest hours and, when ready, offering them a compass to reinvest in life.
Today, on Mother's Day, my hope is that as a nation we will honor our collective memories of all our children and embrace their legacies, while remembering the mothers, and families, they leave behind. For today I stand with each of you who have suffered this great tragedy.

I am Joyal Mulheron and will always be a mother of four.